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young children and vhl

kimbre
  • By kimbre
  • Posted February 4, 2008 at 11:18 pm · 13 replies
  • In Kids and teens
  • Shared with the public
0 Recommendations

This is a 2 part question. I was just recently diagnosed with VHL and I am getting surgery for my kidney tumors next week. I have 3 boys- 5 years old, 3 years old and 20 months old. Have any of you had children show symptoms or actually have any tumors at this young of an age? We are already starting the process of at least getting the older one an opthalmology retinal exam. The younger two are probably not able to sit for it yet.
I was just thinking today and wondering if there has been any research or personal experience with medical interventions that may be harmful to a child who may have VHL. I was particularly curious about vaccinations and any possible negative effects from them. It is probably ridiculous to think this, but I really want to make sure I know all I need to. Any input would be much appreciated. This is so new to us and I want to do all I can to equip our family with knowledge.

Explore topics in this discussion:

Heart transplant Measles Surgery Pheochromocytoma

13 replies

diaryofageneticdefec

hi Kimbre
i've know about VHL all my life, it was a shock to my parents and for a very long time i thought i wouldn't have children because of the 50/50 chance but 61/2 months ago my first child was born and i couldn't be happier. Having said that today our geneticist called as we want her tested asap. I want to know her VHL status and he reminded me that they don't screen till 5 years old. As far as i know it is unbelievably rare for children younger to have tumours. Always worth being vigilant and tell your optician so they look out for things in the eye.
again, i know of nothing that could cause problems with vaccinations and as the fatality of not vaccinating your child increases i'd advice you get all teh jabs your told to. The nonsense in this country with the MMR really caused problems with a massive increase in measles.
The good thing is that you do know and can make steps to be aware and sort problems out if they arise.
good luck with the surgery and i hope and pray all is well, and as with my little girl i pray the odds go your way and all your children are not carrying the gene, but if they are then the fact that you are so ready to find things out and get help they sound like they are very lucky children indeed.

curlywurly

I have a 6 year old daughter who I wanted to have the DNA test done before she started school. My doctors allowed me to have the test done and thankfully she has not inherited it. When I was younger I was unwell all the time especially with vomiting. Altough it is said that is very unlikely for children to develop anything at a young age, it still happens. Be aware of all symptoms and get regular screening, I hope all goes well for you and your family.

joyceg98

You must be in England. In some countries there is a policy not to test children until age 5. Oddly enough, though, they will test prenatally if you ask, but once the child is born they delay testing until age 5. Go figure.

There are a number of cases -- rare, but not unknown -- where young children have issues with VHL before age 5. Eye, pheo, and ELST have all been experienced by children 1-4.

That said, don't panic! Read the VHL Handbook sections on testing children, and the screening guidelines in the back of the book. We have worked with doctors worldwide to come up with a routine that will reassure parents and protect children.

As for routine things that should be avoided -- we know of no negative interactions with any of the routine shots and such. It is a good idea to protect your child from all the known childhood diseases.

Some parents prefer to space out the vaccinations rather than having them all grouped together. That is a good practice, especially if the parents are sensitive to these things and therefore you might anticipate that the child might be sensitive to them. It means more trips to the pediatrician for you, but might be a good way to ensure that the child does not have any negative reactions to the shots. (That's not a VHL-related statement, just a parenting statement for all.)

In general, as stated in the Handbook, you should avoid use of radiation tests on your child until 18 if possible. Obviously if there is a specific medical requirement for one, then talk with your doctor and you will probably go with it (e.g. an X-ray if he breaks a leg). But if it's just for screening (no problem yet found), we use ultrasound and observation as the best ways to watch out for children.

Just be watchful, as you would for any potential danger for your child -- try not to worry overly much, but also don't withhold the information from your pediatrician that this child is in a family where there is some VHL, and that he or she could be at 25-50% risk for having VHL. It will help the doctor keep from discounting some symptom that might be a clue to VHL.

And most importantly, have fun with your child! Life is a celebration, with some risks thrown in for spice, but not to depress you. Everybody is dealing with something.

Best wishes,
Joyce

marie3

My son is now 6 years old. I had his DNA tested years ago. He inherited VHL from me. Every 6 months I have his eyes checked, as recommended by my Retinal Specialist. Annually I have the Plasma Free Mets Test done on him. Every 1-2 years he has a full audiology assessment.

He's pretty good about having all the tests. He doesn't freak-out, like he used to, for the blood draw. He cooperates for the dialated exam .

Children adjust better than we think. My son knows he has VHL. He knows we watch out for "things" growing in our body.

We have always been completely honest with him about stuff. Not just about VHL stuff. He knows what to expect and there are no surprises. I needle stick pinches. But not anymore than when he's bumped his head or fallen off his bike. But he knows to expect a little pinch. The more you move, the more times you may get pinched.

When my son was first diagnosed, I had a real hard time with it. I was so stressed. But we learn to adjust and deal with things as they happen.

Best of luck!

Sincerely,
Marie

BodyDr

HI Kimbre

My son was 4 when he was diagnosed with VHL and he is almost 12 now. He presented with an Endolymphatic Sac Tumor, behind his right ear. One week I realized he wasn't hearing out of his right ear, and witihin days of that, half of his face became paralyzed. Then he had no issues for years, until he presented with 11 retinal hemangioblastomas in 2006. He had them lasered at Wills Eye Hospital and sees very will now. In fact, because they were found so early, he has had no serious visual repercussions. He got his first pair of glasses this week for his weaker eye.When we first started with all of this, there was no pediatric protocol and it was very difficult for us with the docotrs and hospitals. We were on the east coast with some of the best of the best, too! In all of my research, I have not found a link to any vaccinations. We beleive this is purely genetic and it was already functioning in our son before birth. The best advice I can give is to follow the protocol set up by the VHL Family Alliance, and listen to your doctors. You will learn to keep records and be on top of your care and the care of your children. It will take some practice, but soon it will be second nature. Good luck to all of you.

pheox3

Hi,

I just read your post. I do have one child who has showed some signs of Pheochromocytoma since she was about 5 years old. Her tests have always come back negative.

I was 7 when my symptoms of the Pheos. began. Tests showed that I was negative, however they were incorrect. I was first dx. and had surgery for the Pheos when I was 11.

Just a note: I have had the Pheos several times. Each time I have had symptoms for several years before the doctors have dx. it.
For me, (as well as others I'm sure) if the tumor is not being "active", they usually cannot be detected.

nansyeri

My children are 3 yr and 7 mos. they both have VHL, but their PCP is a great female doctor that has bowed to help us take care of our children's health, She herself has a baby that had a heart transplant and is now very healthy. I have a binder for each one and am keeping track of every doctor visit what she reccomends and the doctor is going by the VHL handbook shared in vhl.org. It is so wonderful to have found VHL Family Alliance, I have used everything here as a guideline to stay on top of things.

joyceg98

What great parents!

And this is a perfect opening to talk about our new VHL HANDBOOK KIDS' EDITION, written by a committee of parents and professionals who have been working on this project for nearly two years.

The book is BEAUTIFUL, illustrated by Our Kids, with drawings and photos by kids with VHL and their siblings.

It is current at the printer's and will be ready for shipment by the first of June. We will have copies at the Anaheim meeting in June, or you can order copies now from our website.

http://www.vhl.org/vhlsales/books.php

It will be available from Amazon.com both in the US and in Europe. Paid-up members of the VHL Family Alliance can get it for half-price through us.

Best wishes,
Joyce

lifeandhope

I have a two year old and a five year old, both with VHL. I have had them go to the eye doctor every year since age one, and ultrasounds of their abdomens each year. You would be surprised at how well they take it in stride. Even at one years old they both did fine. This is just part of their "normal". I do worry about them, though, as they are my little babies and I don't want anything bad to ever happen to them. I just try to keep their lives joyful and positive, and we'll deal with VHL when it creeps up.

kimbre

hi lifeandhope,
thanks for sharing. i was wondering if your doctor suggested the yearly abdominal ultrasounds? can you tell me how you went about getting them done? my doctor has not, and she also just waits for me to ask for things. i feel like the only way i get things done for my kids is to be an advocate for them. i am the same as you- i keep things positive and deal with things as they arise.

lifeandhope

I have to be very proactive; I ask for the tests, I make the appointments, I do everything. I just do research, gather information, and ask the doctors to order the tests/appointments that I need for my girls (myself also, for that matter). The doctors are so busy and have so many patients that they don't have time to worry about each one, so you have to advocate for yourself. Good job for keeping things positive. VHL is a bad disease, my Daddy died from it and I've suffered a lot, but life is not all about VHL and there are so many great blessings in my life. I have a great husband, two beautiful and delightful daughters, two cute puppies, a great house, I get to go to graduate school-- I choose to focus on these blessings instead of lament what VHL does in my life. I do miss my Daddy very much though....

kimbre

thank you. i am so sorry about the loss of your dad. i lost my mom to vHL as well. me and my sister have it as well as my children. it is hard and if i focus on it and worry, that is not living life. our lives are a gift and we need to be thankful and hopeful. i think at first i wanted and expected the doctors to know exactly what to do. now i am realizing how much i have to help them and take care of things. i really appreciate your input.

pupa

we are aj
ll together









we are all together always love to all

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